Friday, August 28, 2015

life lessons from little professors.

I haven't written a post in a very. long. time. I write now because after a very heartbreaking 3+ months in the land of SMA, I have hope. Actually, it's the most hope I've ever felt. 
I have more recently considered myself sort of a 'spiritual realist' meaning I look to the universe for signs and answers, and I find so much meaning in moments and nature. Since Charlie's diagnosis everything means something to me. When an owl visited us last year I became obsessed with googling them and what they symbolized... I took that information and gently filed it away with everything else my little professor has taught me. Ladybugs, dragonflies, hummingbirds...they have all taken my breath away and made an impression on me these past 5 and a half years...that's the spiritual part. The realist part means I am well aware of what's really going on here...the answer to this equation is the sum of ALL parts...I force myself to look the ugly straight in the eye and I very willingly immerse myself in the beauty of everything Charlie, fragility and all, to come to what I have thought, are well rounded conclusions about this life of ours.
When it comes to SMA this philosophy has taken very good care of me. I know my daughter is very sick, I am very aware of how this story usually ends so I inhale her, learn from her, see the world differently because of her, all while reminding myself it probably won't last forever. I have never really strayed from the 'reality' of this situation, I have never really dared to DREAM of what could be...I have never given myself permission to, I was afraid to, I still am sometimes. I have been afraid to get so caught up in hope that if anything other than my fluffy happy ending occurred, I would have been unprotected and devastated beyond belief, much worse than if I just faced the cold hard facts all long. I thought It best to prepare for the worst. I thought that if I kept reminding myself her time here was short and stayed far away from denial, i'd be safer in "the end".

After a heavy few months a couple of things have tweaked the way I have been accustomed to thinking. 
In May I broke my ankle. Man did it affect my mental health...I was so used to running and keeping busy for FIVE YEARS that I wasn't actually really dealing with a lot of things I should have been dealing that I couldn't, very literally, run from my life I really had to face it. I didn't know what to do with it though, I still don't. How do you process real impending doom? How do you sort through it and make it ok with yourself? I had a lot of time to think about it though. I was crying a lot and just generally depressed that I couldn't even take care of Charlie properly...we are always focusing on Charlie not getting sick and forget to realize we need to be in tip top shape to take care of her...I guess that's any parents worry, but I ended up feeling ultra alone, with too many overwhelming responsibilities. I became riddled with eye was permanently twitching, I developed psoriasis, I had scary dizzy spells and was on a first name basis with my doctor. I took Charlie to Canuck Place for a few days right after my accident because I couldn't  really lift her (although I still would...I didn't know how to relax) and they were kind enough to help me take care of her. 

While we were at Canuck Place Charlie's buddy Florence who also had SMA came in with her family for end of life care. I was texting with Michaela, Florence's mom, and asked if I could see Florence. Shortly before she passed away Michaela invited me to come into her room to see her. I stroked her beautiful angelic blonde curls and sobbed with the family...this disease is so heartbreaking. A couple of hours later I was in the TV room at Canuck Place with Charlie when a light went on over the bedroom door that Florence and her family were in. One of the nurses informed me that when that happens it means the child has passed away. I had Charlie on my lap when I saw the light. Instant tears. I promptly picked Charlie up, placed her in her wheelchair, apologized for myself, and quickly limped to our room. When I got there I scooped Charlie out of her chair, hopped her to the bed, laid her down, jumped in, spooned her tight and sobbed and sobbed. She asked, "what's wrong mom, are you sad?" I said "yes, mom's sad Char." and it's like she knew this was a time to just let mom hug her for way too long. And she did. She cooed and smiled and just let me weep and hold her close. A week later I went to Florence's celebration of life and spoke about SMA at it. It would be my first time as an adult at a child's service and I was very emotional and nervous leading up to it but it wasn't about me and it was so, so beautiful and powerful. They played Katy Perry's "Roar" during a video celebrating Florence and I weep and think of Florence every time I hear that song now.

I met Michaela about two years ago via email. I can't really remember but I think it was one of our girls therapists that encouraged it and introduced us. We planned a playdate for our girls. I showed up with Charlie and stayed much longer than I expected to. We shared our diagnosis stories and many tears. Our girls gently grasped tiny animal figurines on the couch and smiled and talked to each other in their own secret language. It was heartwarming. They were instant friends and they were like each other. Charlie was 3 and I had never seen that before. And it was this day that the beginnings of the first instigator of my new found 'hope' was born...I held Florence at one point. I remember really noticing a substantial difference in her strength and muscle tone from Charlie's. It was clear to me that she was much weaker then my girl. My heart sank. I later told Matt that I wasn't sure if I could do it again. I was scared to get close to Florence because I didn't think I could handle it if something happened to her too. I wanted to 'protect' myself from the hurt of losing her too. I thought about how many people might be afraid of my family, busy 'protecting' themselves, and it hurt, we needed them. I saw Florence a few more times at her home, at Canuck Place events, and at the hospital. And something happened when she passed away, and when I recently went out for dinner with Michaela I told her the end, I only wished I had gotten to know Florence better. Not for one second did I regret meeting her, I only wished for more of her. Florence was another little professor that taught me a HUGE life lesson...while I've been busy 'protecting' myself, I've been missing out on what really matters and what will truly fill my heart. We can't really plan a lot for the unknown, we don't know how we will cope or react until we are there, so try to enjoy the journey as much as possible along the way. Thank you for this lesson sweet Florence.

Another instigator of this new hope that I carry is that right around that time I had begun to plan a run to fundraise for SMA. I asked Michaela if it would be alright to honour Florence and call the run 'Florence and Charlie's 10k to End SMA' and she was happy to be a part of it even when she was/is dealing with so, so, much. Planning the run was super stressful but fun and a good place to put my energy. It was successful and we raised $25,000. Currently there is so much happening in the world of treatment and the cure for SMA that it has made me think, maybe it's possible?  Maybe we can work hard and fund the cure? Why CAN'T I have real hope? What if instead of  planning on being devastated that something happened to my daughter while I was too busy hoping, I instead had fewer regrets BECAUSE I never gave up and always carried hope for her and all of the other families affected by SMA? There will be many close calls and seemingly hopeless days to fall back on like a bad habit, but I have decided to try my best to put out into the universe what I want back from it. I will now consider myself more of a spiritual optimist (who relapses as a spiritual realist from time to time). :)

Sunday, September 29, 2013

This much.

Last night she choked. It's been a while since I felt that kind of fear. I was in the living room when she let out an ominous weak cry. Until then she was in the bedroom sleeping soundly with her bipap on, which unfortunately gives me a false sense of security. Then I heard the soft whimper that was trying it's best to be a shriek and I knew Charlie was trying her best to tell me that something was very wrong. I ran into the room. She was looking up at me with fear in her pink watery eyes and It was obvious she was having trouble breathing. I was immediately transported back to the ICU isolation room at Children's hospital and it was October of last year. I saw the doctor, her face distressed looking. I heard the words "you could just be walking along the seawall and it could happen there. Everything could seem fine, then there's a choke you can't clear..." For 48 second in the bedroom last night I thought this was it. This was the walk along the seawall and the choke I couldn't clear.
 I suctioned, I patted her chest and back firmly...I suctioned, I patted her chest and back firmly, and over and over again. I kept asking Charlie if she was ok. Nothing. I asked her to repeat after me, "I love you momma." Nothing. "Do you need to be flipped? More suction?! Keep hitting your back?!" Nothing. And then something. Some whining. And some more whining. And then I asked her, "do you need more suction?" And she cried out, "Nooooo." Somewhere among all of the fairly controlled chaos I noticed the bipap humidity was off and that the water had leaked out everywhere. For a second I wondered if it had somehow drained into her...was she 'drowning'?! But how could that happen? Nooooooo. I realized that she was getting dry air blown in her face and eyes...causing the watery eyes and coughing. I fixed everything up, repositioned her and began to relax again. 
I went to bed and snuggled her and wondered, "how is it humanly possible to love her exponentially more and more every single day when every single day I think I couldn't possibly love her more than I already do?" Like how does my heart and soul even began to fit all of it in there?? I love her so much I grit my teeth and clench my fists involuntarily whenever I think about it and whenever I tell her I do. 
I ask Charlie every day, "Charlie, who loves you?" and she replies, "Momma does." "How much do I love you?" "This much!" she says, all pleased with herself that she knows the answer. "How much?" I repeat. "ummm, ummm..." She stammers. And I say, "to the moon annnnd..." "BACK!" Charlie exclaims. And throughout our day she'll randomly tell me, "I love you momma," And bat her pretty blue/gray eyes in my direction. It's as if she's intentionally trying to be the definition of adorable. 
She has succeeded. 

Tuesday, January 29, 2013

I love her.

(Love of my life, 43 months)

We've been home from the hospital for a week and a half now. And something is different in me. I'm afraid. I'm not sleeping well  (even when I have the opportunity to do so) and I'm crying a lot. For the first time I am really seeing things for what they are. Yes, yes, I've always acknowledged that I have a "terminally ill" daughter but honestly it never really, really registers. If I'm with a group of people and the topic of Charlie comes up and someone doesn't know her or about her  situation I will explain that she has a "terminal illness"...I honestly keep saying it so that one day I will really hear  it and it will sink in. I do this because I think it will help me to 'prepare'. I've come to believe that it's our bodies way of protecting us...we shut such painful things out so we can carry on...who could honestly feel the weight of that on a daily basis and still get the laundry folded? What is changing though is that it is all really, really beginning to sink in...I have a terminally ill daughter.

This last hospital visit was intense and eye opening. At one point Matt and I met with a group of doctors and a hospice nurse and discussed our 'options'. Everyone was gentle yet frank, they really wanted us to have as much information as possible to make informed decisions about where we want to go with Charlie's care. We discussed that if/when Charlie dies it can be pain free and in our arms.
My eyes just welled up typing that. 
I can't stop fixating on the fact that in my lifetime my child that I (we) made and dreamed about our whole life and future with, will die in my arms. That is just fuc*ing brutal. I can't believe that I am that woman, that this is my life's path.

It was explained that at anytime, Charlie could get a plug in her throat, start choking and we may be unable to help her. I could be on the seawall, just walking along and this could all go down. I'm terrified of being alone when something horrible happens. I've developed separation anxiety. When Charlie goes to Matt's I get desperate moments to see her. What if the last time I saw her is the last time I ever see her?! But at the same time her care has become so much more demanding that we need the breaks too. Thank god for FaceTime. When we're home alone with Charlie she needs to be constantly watched. When I do the dishes I am continually yelling out to her in the living room, "Charlie say coca cola, Charlie say "Shrek" Charlie say, "momma" if she replies she's not choking, if she doesn't she may be and I need to run in and check that she's OK. This is our normal now.

The progression of Charlie's disease just sort of snuck up on us, like when you look at a picture of your child a year ago and you stare in amazement and really realize how much they've grown. There is no denying that Charlie is not the same kid she was a year ago. Smarter? Yes. Funnier? Yes. Talking up a storm? Yes. More beautiful than ever? Yes. Even sweeter (if that is even possible) YES.  But sicker and weaker? Yes. :(

I pray, pray, pray, that our girl keeps fighting and loving life and that Matt and I have the strength to handle whatever comes our way.
I love her, I love her, I love her.

Wednesday, January 16, 2013

Keep shining.

(Charlie, still smiling through it all, almost 43 months)

Warning: this is not an uplifting post.

Charlie is in the hospital again. But not because she's 'sick' but because we think the disease is progressing. I honestly don't now which is worse. If she 'just' gets sick, and doesn't die from a plug or any of the scary complications that sickness can bring, she has the opportunity to get better again, IF she makes it through. If she stays cold free and the disease 'just' progresses on its own, there is no turning back from there, it's just the new and less improved Charlie. Two complete shitty ends of the stick. The sad truth is that every sickness Charlie gets and makes it through from is one more X on her borrowed time card...every sickness takes a little something from her that she'll never quite get back.

These past few weeks Charlie has been sounding like an old pug. She has a lot of secretions (spit) building up and we are literally suctioning her every minute. But she's happy. So happy. As was the case with Charlie's delayed/questionable sickness and diagnosis in the first place, how do you know something is really wrong with your child when they are smiling ALL THE TIME?! Charlie has been having laboured breathing and has pretty much just been like, "I can't breathe but whatever, I love my life I'm gonna smile and laugh and sing and randomly say in my sweet Elmer Fudd voice, "I wuv you momma" and make everyone else around me melt to the sweetness that is Charlie." And that's what she does, she sweetly asks me, while batting her eyes, "I want momma to hold me like a baby." And I do, and she chokes, and I hurry to put her down ans suction her. But she just continues to risk it and love and be loved. It's worth it to her. She's amazing.

In the past week Matt and I have both individually experienced an episode where Charlie chokes when we are alone with her and we see her life (and our own as we know it!) flash before our eyes. For myself, I was putting her down for a nap the other day when I saw Charlie's eyes closed, her mouth open and in a circular shape like a person who is experiencing a hard cough, and heard some wheezing...but it was the look of shear fear in Charlie's eyes that told me, "NO, this is SERIOUS!" I started suctioning between POUNDING her back, I was trying to move out whatever was trapped...I looked around my room, I don't know what for, then I wondered where my phone was...I was frantic and wondered, "Should I run out to the hall and scream for help?! WTF do I effing do?!" All while pounding Charlie's back and sides and suctioning as deep as I could go. In the end I decided that running out into the hall wouldn't do any good, NO ONE but me could help her, IF she could be helped. No nurse, no doctor, no one. It would be too late by the time anybody could intervene. Charlie eventually settled. And I sat on the bed beside her and thought, "Holy sh#t. this. is. my. life." I was drained. Imagine your kid running into traffic and coming so close to being hit by a speeding SUV and you going into fight or flight mode and wondering "is this it?" Almost every. single. day. and sometimes a few times a day. It's not right. It's just not right. We are walking a tightrope with Charlie in our arms, who is looking innocently and lovingly into our eyes, and trusts us to protect her and keep her safe from harm. And that's the case with every parent, I get that, but I just feel like our fight or flight life or death scenarios outnumber our carefree breathe easy times, and it's just not right.

The scariest thing that's been on mine (and Matt's) mind is what Charlie getting sicker looks like now and in the long run for Charlie. A couple hours after Charlie was admitted to Children's hospital Matt and I had been given the tracheotomy talk. Please allow me to note beforehand here that I realize that this can be a touchy subject and I do not want your opinions on this nor do I want you to think I'm judging your decisions, this is my daughter, our life, our choice. OK, with that out of the way...from day one Matt and I discussed that a trach would not be our route. We would use bipap, but didn't want to trach Char. Our reasoning is that we felt like she would be letting us know that it was her time to go. Anyway, our discussions on it are not carved in stone, and we will be revisiting this subject tomorrow with all of Charlie's doctors and medical team. Let me just say that it has been a very emotional few days where I wonder "If we trach her she can't talk anymore and she needs 24hr round the clock care and what if she was telling me she wanted to go.." And on the opposite end of the spectrum, "If we don't trach her and they find a cure in 2 years will I be riddled with sadness and guilt at what might have been..." And of course I have NO IDEA how I'll be 'after' Charlie...I'm terrified of the unknown and my grief. There is no definitive answer. And I frankly do not fu*king like that! This is one of those choices in life that I wish wasn't mine (or Matt's) to make.

For the time being we are just going to bipap Charlie more, treat her like the fragile princess she is, and enjoy our time with her. Charlie is the love of my life and I cannot imagine spending my life without her in it. Matt and I are going to consider this hospital stay a reality check, one where we are reminded that our daughter is very sick and to really, really, enjoy her (and life in general) while she's here and happy. 

We loooooooooove you Charlie. Keep shining sunshine!

Friday, November 16, 2012

My daughter.

(on the mend @ Children's Hospital)

My daughter. My daughter. My daugh-TER. Two words that just naturally fell from my tongue the past 3 years and 3 months. Of course for the first few months after Charlie was born those words seemed so strange to say...I loved saying them, but I felt like a fraud and it took a few months for 'my daughter' to really feel legit. After that, it was completely natural and I felt like life had been saving this label for me (Charlie) my whole life, just waiting for me to be ready to accept it.
Lately though, every time I catch myself saying "my daughter" the words reverberate in my head...I feel an immediate flash flood of pride come over me...if I was a peacock my feathers would be fanned so proudly no one could miss me and people would "ooh" and "ahhh" over the glorious display. I'm sure this is happening because I am more and more in awe of Charlie's courage and resilience...she goes through and puts up with so much yet she is the happiest most optimistic little being I've ever met. I have learned more in the last 3 years since being blessed with Charlie, than in my 31 years before her. She is my little professor of life and true love.

Speaking of courage and strength...Charlie was recently hospitalized for 3 weeks with what seemed to be her worst sickness yet. There were at least 3 occasions where I thought we were going to lose her. In one instance I remember there were about 6 nurses and respiroligists in the giving her oxygen, one deep suctioning her, one checking her bipap, it was tense in the room, Charlie's heart rate was high and her oxygen was really low...I was asked to give her chest physio while everyone else carried out their 'jobs', In all honesty, I didn't want to,  it was too much pressure, but I complied...I sorta froze and had an out of body experience...I saw myself above myself watching the stressed chaos in the room, looking down at all the help and Matt and myself. I felt like I couldn't breathe and like I was going to pass out but it wasn't transparent to anyone else in the room, to them I was just doing what they asked, pounding pretty hard on Char's back and chest trying to loosen the plug that threatened her life, but inside I lacked confidence in my ability to help and I saw her dying and I saw my life without her, and it wasn't pretty. In that moment all of the fears I push aside on a regular basis surfaced and I realized I can. not. live. without. Charlie. EVER. Ever. EVER. It just can't happen. Case closed. 

While we were in the hospital as per usual we went over the 'how far are you willing to go' business with Charlie's main respiroligist. Matt and I had always discussed that as a last resort we would be willing to intubate Charlie (a tube pushed down the throat to help her breath when she can't on her own). It was/is the one tool we felt we had in our pocket, the one thing we would try once if nothing else worked. We'd been warned in the past that Charlie's jaw is recessed due to SMA and muscle weakness and it could be pretty painful to intubate her in an emergency situation, but like I said, we just want sooooomething...we need one "in case of emergency break glass"option. Anyway, when we were in the hospital this time and we were discussing this with the doctor, she looked over at Charlie and said, "Ya, I'm looking at Charlie now, and because of the recession in her jaw, I don't think it would even work." My heart sank to my foot at 100 miles an hour. Really?! Please don't take that away from us. And not at a time like this when we're worried we're gonna have to break the glass. We were devastated and felt instantly powerless. The doctor was just being honest but I don't think she knew how much security it provided us with to have that in our pockets. Now we have nothing but hope. Scary Sh#t.

This was Charlie's first hospital visit since she learned how to talk. It was heart melting and heart wrenching at the same time. Charlie would cry out, "moooooomma" every time she got chest physio and deep suctioning, and it would break my heart. But eventually she realized it helped and every time a nurse or therapist was finished helping Charlie, she would say, "Fank You!" OMG, now THAT is the heart melting part! 

After three weeks of many touch and go moments, Charlie made bail and was released for adorable behavior. We are back home where we belong. Her current fixations are Halloween, fireworks, and Christmas. Doesn't get much better than that, does it?

Friday, September 14, 2012

A very happy un-birthday to you Charlie!

(My little lady, Sept 2012)

A couple of weeks ago I realized that I'd forgotten to write Charlie's monthly birthday posts the past few months. At first I was hard on myself for forgetting, concerned that I was getting lazy and taking Charlie's time here for granted, but when I pondered over it some more I came to the conclusion that 'forgetting' her monthly birthday posts was actually a good thing. I'm not forgetting how special she is or taking Charlie's time here for granted, i'm enjoying it and believing more and more everyday that she has years left in her, not just the months we were initially told she had when she was diagnosed. It took 2 1/2 years to get here, and I'm finally able to relax a litttttle bit...a little bit.

Just when I jumped that hurdle though, another one took its place...I used to (and often still will) worry about keeping Charlie safe and alive, and now I'm worrying about making her life as full as possible...with school, friends, experiences etc. Today we went to the park. I pulled Charlie out of her stroller on my lap, and onto the swing. As we were swinging, Charlie grinning from ear to ear, 4 children surrounded us. They started asking questions...a lot of questions. "Where does she eat from?" "Why?" "Can she walk?" "Will she ever get better?" "What's that machine for?" "Does she have a dad?" "Why do her front teeth stick out?" "The way you hold her, she looks like a puppet." That last one stung.  One of the little girls looked absolutely devastated when she heard that Charlie would never walk, her eyebrows furrowed and her big brown eyes instantly dropped towards the pavement and you could see that it was the worst thing she'd ever heard...her reaction broke my heart all over again too. I answered all the questions as best I could, knowing that all the kids meant well, but I still needed a good cry. The second I got home and my apartment door had closed behind me the tears flowed. Rough stuff. 

Tomorrow is the Canuck Place Adventure Challenge. I'm really looking forward to it. Once I'm in that environment and I am reminded of all the little miracle children and angel children that have come into my/our lives, my perspective will shift again. Every now and then I need a little shoulder shake, and anything Canuck Place usually does that for me!
Charlie and 'Charlie's Angels' thank you for your support!!
Watch Global news 9am tomorrow, we're being interviewed from Deep Cove before the race.

And, if you haven't, join the 'Charlie's Angels' Facebook page!